Hello, I am new here. First of all I want to thank you all for your posts. I have learned everything important about LD here. The standard medical websites are completely useless for this disease.

I discovered a small lump in each foot about a year ago. After a quick google search it was obvious this was LD, though I am a 50ish woman, otherwise quite healthy and active, with no known family history of DD or LD. My podiatrist said best to watch and wait, maybe would never become a problem, and talked about Verapamil and cortisone injections, with surgery as an absolute last resort. At first it was not painful at all and I actually forgot about it. A few months ago I started having a lot of foot pain and thought it might have been from the rocky trail I’d hiked, or the long flights I’d been on recently, or too many hours in “nice” shoes, but then remembered the LD. I discovered I had more lumps and what felt like cords. I started researching like crazy and followed up on every lead I came across, in this forum in particular. It seemed clear that “watch and wait” is exactly what one should NOT do when nodules are small and the LD is active. RT seemed to make the most sense to me.

I called Dr. Tripuraneni’s office at Scripps (from the list on this site). So great to talk to people – the nurse, the scheduler - who knew exactly what I was talking about! I scheduled a consultation. When I told my podiatrist about it, he actually became angry and seemed to insist the pain was from plantar fasciitis (which I’ve never had to my knowledge). I was so shocked, my whole family has known him for many years and he has always been great. He couldn’t believe radiation therapy was a legitimate treatment, though he acknowledged Scripps’ excellent reputation.

I went last week for the consultation. Scripps is in La Jolla, a two-hour-plus drive from where I live. The facility is very nice – super organized and friendly. Again, very reassuring that everyone was familiar with LD. I was told they see 30-40 patients a year for DD/LD the past several years. Dr. T., who has a very nice manner, examined me, found the nodules and cords and outlined them in ink, took photos, discussed my symptoms at length. He said I was a good candidate for RT, in an active stage and with small nodules. He said about ¼ to 1/3 of the patients he sees for this he will not do radiation on because they don’t meet the criteria. He examined my hands and said no sign of DD, fortunately. He talked a bit about Prof. S., with whom he has authored textbooks and has a good professional relationship. In a way I had really wanted to go to Germany to be seen by the world expert on this disease, but Scripps is less disruptive to my family and I have confidence in Dr. T. I will go July 22 for the “planning session” and CT in the morning, then the first treatment later in the day. I’ll go each day for five days, M-F that week (3 Gy each day). After four weeks I’ll go back for evaluation and to schedule the second round.
My health insurance is Anthem Blue Cross PPO, and they said the treatment would be covered without need for pre-authorization. Now I just have to hope it’s effective for me. I plan to be active and walking, hiking, etc., for many more years. This disease seems to be so unpredictable though.

I wanted to mention I have found swimming feels great on my feet. I still walk a couple of miles every day (in trainers with orthotics), but my feet are sore afterwards. The swimming is fantastic though. It almost “scratches” the “itch” I feel in my feet, that feeling of active stage LD that some people have described here. If I swim in the evening my feet feel better all night.

I will post an update after my first round of treatment. Again, my thanks to you all for taking the time to post your experiences.

Hi Luba,

Thanks so much for the reply. I remember reading about your experience at one point but I couldn't find the thread. I'm glad the RT with Dr. T. was so effective for you, I hope to have as good an outcome. I think I'll stay in La Jolla for 2-3 nights and drive back and forth the other days. If it's not too much trouble I would appreciate the name of the hotel where you stayed. My daughter will go with me for this round, and a couple of friends have volunteered to go with me next round, when my daughter will be away at college. I'm sure everyone would be supportive no matter what, but La Jolla being so beautiful definitely makes it more appealing! I live in the LA area - maybe you do too - and I find it so surprising that with UCLA, USC and Cedars-Sinai nearby, no doctors here are treating LD with RT. Or at least not that I could find any information about.

I am grateful that my insurance covers this when I hear that Medicare doesn't. Hard to understand the reasoning behind that.

Thanks again,
Spica

spica:

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I will go July 22 for the “planning session” and CT in the morning, then the first treatment later in the day. I’ll go each day for five days, M-F that week (3 Gy each day).

I think your driving and activity contributed to the soreness you experienced. You might want to take it easy for the next round of treatments. I don't recall having any problems after radiation, but everyone is different. As far as seeing changes in size of the nodules it takes time, my nodules continued to shrink months after the radiation and four years later they are 90% gone. Keep us posted.

Edited 08/06/13 17:12

Thank you for this info. I am brand new to this, having seen two foot doctors that have told me nothing, and that radiation was not done for non-cancerous issues. I am not trying a radiologist in Seattle tomorrow and am planning to take him the info on Ledderhose. A radiologist in Fairbanks AK recommended this guy, so at least I feel hopeful that someone will listen to me. I am 52 and have had this since Janiary, when walking in burs on the beach brought this on
I am so happy to hear about Scripps, as I too, am hopeful but nervous about traveling to Germany. Please provide updates, I would really appreciate it. Thank you.